Living with Acute Lymphoblastic Leukemia

Ponatinib

The only option I had left was a phase 2 study being done in a hospital across the street from where I’d been receiving treatment for the last year. I was not the slightest bit excited about meeting new doctors, never mind new hospital administration. When I was first diagnosed the course of chemotherapy I took was part of drug trial – (getting extremely intense regimens of chemotherapy normally only used on pediatric patients. Older patients often can’t withstand such intense treatment but ‘older’ usually means about 80.)

Drug trials can get you access to cutting edge treatments, especially in Boston. Sometimes it also means far more painful procedures (bone marrow biopsies, spinal taps, voluminous blood draws, etc…) than you would be subjected to otherwise. Some patients forgo traditional treatment to get into a drug trial only to get a placebo. Dose escalation studies essentially knowingly over- and under-medicate a large percentage of the patients in order to zero in on the most effective dosage.

That said, I chose drug trials and experimental treatment every time I had the chance – four or five times so far by my count. There’s certainly an added suck factor but the potential upside is hard to resist. Even if it isn’t effective in your case, that acquired medical knowledge will help the entire cancer community. I’ve heard the same thing from so many other people I met in studies – when you’re that sick, doing something helpful with the time you have left seems like one of the last decisions you have the power to make.

It was pretty clear this trial was a long-shot. I managed to dig up some of the phase 1 study prelim data, some patients lived a little longer than expected but everyone still died before the end of the study. All of the BS that came along with these drug trials just didn’t seem worth it anymore. I just wanted to be comfortable and die in my own home.

I only agreed to do the study for my family. All I saw was more pain and discomfort until my inevitable death. Why should I spend what little time I have left sick as hell and on chemo? I’d done plenty for research, I should be able to have a few weeks at home and die comfortable in my kick-ass bed. Even after agreeing to do the study I told all of my family members more than once not get their hopes up – I didn’t want to watch my family have to accept all over again in a few weeks that I was still going to die.

The new drug trial was at the Dana Farber Cancer Institute. I spent a good week just answering questions, signing paperwork, giving blood, getting marrow stolen. The requirements for this study were extremely specific – I have an extremely acute and active form of ALL, I’m Ph+ and i’d unsuccessfully already completed treatment with the top 4 tyrosine-kinase inhibitors available. Because it was a new hopsital they wanted all new samples and their own test results. There’s a very common test used to determine whether a patient is Ph+, other methods are more reliable but also much (much) more expensive. I’d go into specifics but I’d probably get a bunch of it wrong.

Long story short all my tests came back as cancer-y as expected, expected for the one that shows I’m Ph+. Consequently when I showed up for my first dose I was told I’d been rejected from the study because my cancer wasn’t badass enough if I wasn’t Ph+. What sucked was everyone knew the test was a false negative, it’s called ‘cryptic leukemia,’ and it’s known to return false negatives on that exact test.

The company running the trial is tiny in drug company standards. This is the second of only 2 drugs they’ve developed to date. This study is an attempt to get this drug FDA approved for use on humans and as a result the methodology is extremely strict. Everything will be picked apart by the feds when the study concludes and they apply for approval. They refused to accept any other proof that I was Ph+ except for the test called for in the study. My new team of doctors said all they could do was give me another bone marrow biopsy and hope these results came back positive. I’m going to die in a matter of weeks from leukemia but they’re telling me i’m not cancer-y enough to take their drug.

As luck would have it I just reached the lower threshold to be considered Ph+ on the second test and I was accepted a few days late into the study. I had ~ 3 weeks to live. That was 2 and a half months ago.